Living with Chronic Disease

At our most recent support group, we discussed living with chronic disease. Our guest speaker, a mental health professional that focuses on chronic disease, was extremely helpful in guiding our conversation. I guess it’s difficult for me to think of my condition, of fecal incontinence, as chronic disease. However, as with most bowel disorders experienced in our support group, the waxing and waning of symptoms throughout my life would define it as such.

Chronic disease and it’s impact on mental health can be severe. As I have shared before, mental health professionals and therapy were pretty heavy components in my healing journey from both the physical and mental ramifications of the birth trauma. In dealing with a condition day after day, a condition that is chronic, one needs to supplement their mental fortitude with strength from others as well as within. It’s not easy for me to know that I will be fecally incontinent for life. However, the facts remain that my sphincter is damaged, and without medical intervention, like the Interstim, I would be completely incontinent of feces. The fact remains that to this day I have good days and bad (mostly good), as well as a medical device that contains a battery that will have to be changed throughout my lifetime. The fact remains that I continue to have diet modifications, as well as, pelvic floor exercise suggestions that I am supposed to follow on a daily basis. The fact remains, I am living with a chronic disease, that, although manageable, can alter both physical and mental outlook.

So, what do you do when you realize that you are living with a chronic disease? According to our speaker, the number one realization that you need to make is that your mind and body are connected. So, even though your mind isn’t “causing” your physical body ailment, your mind can alleviate some of you physical symptoms, or in turn, make them a lot worse. Emotional distress can be the very thing that contributes to chronic disease symptomology getting physically worse. By recognizing this fact, often in treatment, one can pay attention to emotional stressors, thereby problem solving and potentially increasing tolerance for the emotional distress so as not to have it manifest itself physically.

Too often, our anxiety about a chronic disease creates a negative feedback loop that, in turn, creates real physical problems, exacerbation on the underlying chronic illness. It is only in recognizing this phenomenon that we can continue to heal our minds, in an effort to live with minimal disruption of chronic disease.

Thanks for reading,

Lauren

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Lisa Said:

I suffer from Fecal Incontinence due to nerve and muscle damage. It is comsuming me and I am so sick of it. I had the Interstim for a year and recently had it removed as it did not work for me. My only other options are a Sphincteroplasty or a Colostomy which both have some severe complications that can happen. I used to enjoy life and now am a hermit due to the issues. I am glad that you are talking about this problem and the effect it has on people’s lives! I wish more people would talk about it. There really are NO support groups that you can attend in person where I live. Glad to know that the Interstim has helped improve your quality of life and you found something that can help you get through this awful condition.

I am at a loss about what to do to regain my life back. I was let go from my job and will have NO health insurance soon and it’s literally killing me from the inside out….

Lisa- Thank you so much for sharing your story. It is so important to have support in your life. It sounds like you are able to gain some insight from others stories, but an in-person support group is always a special way to share. Have you thought about starting your own? I am truly sorry about your medical and financial troubles and I wish you the best of luck. If you would like to speak more privately, please e-mail me at peace4Lauren@gmail.com. -Lauren